David Menadue reflects on 20 years with NAPWA

David Menadue is a founding member of NAPWA. In this speech, given at NAPWA's 20th anniversary reception, he reminisces about the early years and reflects on how the organisation has changed.

This year I will have been 25 years HIV positive and involved in NAPWA for 20 years so it has been a very important – in fact I would say, essential – part of my life as a person with HIV. Sometimes being a member of an organisation is just that—you sit back and hope to reap some benefits from your involvement. With NAPWA though it has never been like that. It’s been all-hands-on-deck since the beginning, working to establish what some might unkindly say was a relatively motley crew at the very beginning – with no staff member and a handful of reps from around the country, with deference to Kenn Basham who was there early on – to the vibrant, passionate and effective organisation NAPWA has become today.

The early years were a struggle for our small organisation to be heard amongst the much bigger AIDS Council groups and AFAO [1]Australian Federation of AIDS Organisations. AFAO is the peak non-government organisation representing Australia's community-based response to HIV/AIDS. AFAO's work includes education, policy, advocacy and international projects. – although to their credit AFAO gave us an office and diverted funds to ensure NAPWA was funded early on when the Feds weren’t interested. Throughout all of this though, I never doubted that NAPWA mattered. The very earliest work to set up the National Association of People living with AIDS Coalition (NPLWAC) was done after the Hobart AIDS Conference in 1988 by Keith Harbour, after he did a national tour of all AIDS Councils to see if they would support setting up specific groups for people with HIV/AIDS. We became NAPWA in 1993 after Bill Whittaker contacted the Gang of Four: Ross Duffin, Mark Reid and myself, and we decided to see if we could re-establish NPLWAC as NAPWA. I’m sorry Bill can’t be here tonight because the early work he lead to establish the organisation we know today made him, in some respects, our founder.

The role NAPWA office bearers and Board played in presenting a national face to both Government and the community through the press and so forth was always a critical one. People wanted to know what people with the virus [2]A small infective organism which is incapable of reproducing outside a host cell. felt, wanted a national perspective on a range of policy matters and wanted positive people to be partners in the response. Well at least we insisted for long enough about that, that it became the accepted principle in most of the HIV/AIDS Strategies that Australia has had.

An important change in the work of the organisation occurred in the mid nineties when Scott Berry produced the Positive Information and Education Report (PIE Report) which put NAPWA squarely within the education and health promotion response to HIV alongside the AIDS Councils – creating the AFAO NAPWA Education team (ANET) which has produced some wonderful resources and programs to prevent HIV and help positive people with their health maintenance requirements.

It has been a joy for me and I’m sure for all of you who are a part of our twenty year history to see what NAPWA has become today. In the late nineties people were saying that activism and advocacy was dead or dying in the HIV sector, that new treatments would mean that plwha groups could no longer sustain interest in people to take on governance roles or to work for them. But that has simply not been the case for NAPWA. We have grown, got our own CSSS funding in the dying days of Michael Wooldridge’s time as Health Minister (what a glorious day that was Jo, and a huge relief), partaken in every Strategy discussion and evaluation and too many policy debates, Senate Inquiries and lobbying of politicians to mention, become the authority on HIV treatments and clinical trial [3]A clinical trial is a research study to answer specific questions about vaccines or new therapies or new ways of using known treatments. Clinical trials are used to determine whether new drugs or treatments are both safe and effective. Carefully conducted clinical trials are the fastest and safest way to find treatments that work in people. Trials are in four phases: Phase I tests a new drug or treatment in a small group; Phase II expands the study to a larger group of people; Phase III expands the study to an even larger group of people; and Phase IV takes place after the drug or treatment has been licensed and marketed. participation and become the national peak for plwha organisations around the country. In fact I believe that NAPWA has helped to make sure that the passion that many of us feel here tonight about advocacy and improving the lives of positive people has not died. NAPWA has brought people from around the country and shown smaller state groups in particular such support that they have been able to maintain the connection and the skills to keep going.

Such an outcome could never have been achieved without some incredible dedication and effort from so many people along the way. We have a lot to thank the people who have served on our committees and Boards over the years and particularly it has to be said, the people who have taken on the President roles over the years.

I want to pay a special tribute to Phillip Medcalf who I think is the only NAPWA president to have passed away while in office. Phillip taught me about resilience and leadership and was much loved and respected by many people here tonight. I’m also thinking of Charles Roberts, Geoffrey Harrison, Alan Brotherton, Mark Counter, Andrew Kirk, Peter Canavan, Ian Rankin, Gabe McCarthy and of course Robert Mitchell. But also what would we have done without people like Bill Whittaker, John Daye, Brent Allan, Katherine Leane, Susan Paxton, Bev Greet, Rob Lake, Neville Fazulla, Rodney, Wilo and so many others who have worked as portfolio convenors and Board members.

We have also been incredibly lucky with our staff. Those staff who were here in the early days like Ken and Russell Westacott knew how difficult it was to keep the good ship NAPWA afloat but it wasn’t until we found a captain like Jo Watson that we really started sailing. I don’t think there is a shred of doubt that without Jo’s magnificent leadership and management skills but particularly her passion and support for improving the lives of positive people, that NAPWA would be where it is today.

We are so fortunate to have had you as our EO for the past ten years Jo – you have been our sanity and our saviour in so many ways. You have been a counsellor, a supporter and a friend to so many people here tonight who deep inside are very grateful for your incredible commitment, your vision and most particularly for your friendship. I am so glad to have you as my friend Jo and we all know that you have been the best friend positive people around the country could have.

So thank you to all of NAPWA’s staff, who have all become a part of a very cohesive and friendly team that keeps the national networks functioning. NAPWA’s staff has always been a very welcoming lot, like a large family, who really are doing this work because they like the cause and the people. And thanks to all of you for coming tonight to celebrate a great achievement. Twenty years for the good ship NAPWA.